Tag

Childhood Dementia

All articles tagged with #childhood dementia

health1 month ago•37 min saved

Sick 5-Year-Old Sparks Lifesaving Gene Therapy for Younger Brother

A Long Beach, NY family faces the rapid decline of 5-year-old Anna Somers from metachromatic leukodystrophy (MLD), a rare genetic disease with no cure. Her diagnosis leads doctors to test her 2-year-old brother, Joey, who is also found to have MLD. With a gene therapy approved in 2024 costing about $4 million, Joey will begin treatment before symptoms appear, offering a chance to save his life even as Anna’s condition continues to deteriorate.

via Yahoo News Canada|

#anna-somers #childhood-dementia #gene-therapy

health4 months ago•44 min saved

Couple terminate pregnancy after unborn baby diagnosed with Sanfilippo syndrome

In London, a family reveals that after their two-year-old daughter Leni was diagnosed with Sanfilippo syndrome (a childhood dementia), in‑utero genetic testing showed their next pregnancy would also be affected. Faced with no cure and a dire prognosis, they chose to terminate the pregnancy and now focus on fundraising and pushing for newborn screening and faster access to potential treatments to help other families facing the condition.

via Daily Mail|

#childhood-dementia #clinical-trial #genetic-testing

health9 months ago•3 min saved

Swansea Boy, 4, Diagnosed with Rare Childhood Dementia

A 4-year-old boy from Swansea diagnosed with Sanfilippo Syndrome, a form of childhood dementia, has inspired a community fundraising effort to help him access clinical trials abroad, as there is currently no cure for his condition. His mother, Tammy McDaid, is focused on making memories and slowing the disease's progression, highlighting the urgent need for awareness and treatment options.

via BBC|

#childhood-dementia #clinical-trials #fundraising

health2 years ago•5 min saved

"Tragic Battle: 8-Year-Old Virginia Girl's Slow Decline into Childhood Dementia"

Eight-year-old Abby Alvey from Virginia is suffering from Niemann Pick Type C, a rare genetic disease that causes physical and neurological symptoms, including childhood dementia. Abby's body is slowly shutting down from the terminal illness, and her life expectancy is uncertain. Despite the challenges, Abby's family is determined to make the most of every moment with her, creating a superhero persona called "Abby Strong" to inspire her and others. They have set up a GoFundMe page to support her medical treatments and therapies. The family hopes that Abby's story will raise awareness about the importance of newborn genetic testing and screenings for rare diseases. Niemann Pick Type C is an inherited disease that affects the body's ability to transport cholesterol and fatty substances, leading to the buildup of toxic waste in cells. Currently, there is no cure for the disease.

via Daily Mail|

#abby-strong #childhood-dementia #health

health2 years ago•1 min saved

Childhood Dementia: Rare Disease Diagnosed in 8-Year-Old

Eight-year-old Abby Alvey has been diagnosed with Niemann-Pick Disease (NPD), a rare condition that causes childhood dementia. Abby's father describes the devastating effects of the disease, including the loss of motor skills and speech. Despite the prognosis, Abby's family is focused on finding normalcy and maximizing her life experiences. They have created a character called "Abby Strong" to help her understand and fight her condition. The family hopes to take Abby on a trip to Disney World, allowing her to live her life to the fullest and not give up.

via WKRC TV Cincinnati|

#abby-alvey #childhood-dementia #health

health2 years ago•2 min saved

Childhood Dementia Diagnosis: 8-Year-Old Faces Unprecedented Challenge

Eight-year-old Abby Alvey has been diagnosed with Niemann-Pick Disease, a rare condition that causes childhood dementia. The disease leads to a progressive loss of motor skills, speech, and cognitive abilities. There is currently no cure for the disease, and most children with Niemann-Pick Disease die from infection or neurological decline. Abby's family is focused on maximizing her life experiences and creating a sense of normalcy. They have even created a character called "Abby Strong" to help her understand the fight she's facing. The family hopes to take Abby to Disney World to give her the chance to live life to the fullest.

via WRAL News|

#childhood-dementia #health #niemann-pick-disease

health2 years ago•2 min saved

"Parents' Unwavering Commitment to Embrace Life Despite Daughter's Terminal Childhood Dementia"

The parents of Abby Alvey, an eight-year-old girl with terminal childhood dementia, are sharing her story to raise awareness and inspire other families. Abby was diagnosed with Niemann-Pick Disease type C (NPC) on her fourth birthday, a rare and neurologically progressive disease. With no approved cure or treatment, Abby's parents are determined to make the most of her time, creating memories and experiences. They hope to encourage genetic testing and screening for rare diseases in newborns to prevent misdiagnoses and improve access to funding for children with diseases leading to Alzheimer's and dementia. The family's next goal is to take Abby to Disney World.

via CBS 6 News Richmond WTVR|

#awareness #childhood-dementia #family-support

health3 years ago•5 min saved

Living in the Moment: Toddler Sons Embrace Joy Despite Limited Time

Kristian Tucker, a mother from Spokane, Washington, was devastated when both of her toddler sons, Michael and Oliver, were diagnosed with childhood dementia caused by Battens disease, a rare genetic disorder. The disease typically leads to seizures, loss of speech, motor skills, sight, dementia, and eventually death. The family is working to extend their sons' lives through surgeries and treatments, but their life expectancies are limited. Despite their declining health, the boys remain happy and in good spirits, unaware of their limited time. The family is cherishing every moment they have together.

via New York Post |

#battens-disease #childhood-dementia #genetic-disorder

health3 years ago•4 min saved

Heartbreak and Hope: A Mother's Journey with Her Sons' Childhood Dementia

A family in Washington has been devastated after their two sons, aged six and two, were diagnosed with Batten disease, a rare genetic condition that leads to childhood dementia. The boys will experience seizures, loss of speech, motor skills, and eyesight, ultimately resulting in limited time. The parents and their four-year-old daughter carry a gene that raises the risk. The family is scheduled for surgery to slow down the disease's progression and will start treatments to improve their quality of life. Despite the crushing diagnosis, the boys are currently doing well, and the family is making the most of their time together.

via Daily Mail|

#batten-disease #childhood-dementia #devastating-diagnosis

health3 years ago•3 min saved

19-year-old diagnosed with dementia after mistaking symptoms for long Covid.

Gianna Cabo, a 20-year-old from Texas, was diagnosed with dementia after experiencing memory loss and withdrawing from family and friends. Her mother initially thought it was due to long COVID, but after seeking medical help, doctors discovered no electrical activity in Cabo’s right central lobe. Childhood dementia, which results from progressive brain damage and has been linked to over 70 rare genetic disorders, has no cure, but treatment options include medication, therapy, and nutrition services. Cabo can no longer remember her happy childhood memories and barely shows any emotion.

via msnNOW|

#childhood-dementia #dementia #health

health3 years ago•3 min saved

19-year-old diagnosed with dementia after being mistaken for having Long Covid

Gianna Cabo, a 20-year-old from Texas, was diagnosed with dementia after experiencing memory loss and withdrawing from family and friends. Her mother initially thought it was due to long COVID. Cabo can't remember childhood memories and barely shows any emotion. Childhood dementia results from progressive brain damage and has been linked to over 70 rare genetic disorders. There is no cure, but treatment options include medication, therapy, and nutrition services.

via New York Post |

#childhood-dementia #covid-19 #dementia

health3 years ago•2 min saved

Childhood Dementia Takes Toll on Siblings' Lives.

Renee Staska, a mother from Australia, revealed that all three of her young children have been diagnosed with childhood dementia caused by Niemann-Pick disease type C1, a rare genetic mutation. The disease has no known cure, and most children die in their teenage years. Staska's children, Hudson, Holly, and Austin, are not expected to survive until adulthood. The symptoms of the disease include an enlarged liver and spleen, difficulty coordinating movement, and difficulty with speech and swallowing.

via New York Post |

#childhood-dementia #genetic-mutation #health